Walking the Tightrope

It felt like we’ve been asked to walk across a tight rope without any training or practice. The expert tightrope walker says to us before we walk across, “Here is an extra rope. If you take it, should you fall then it could save you. But, if you take this extra rope then there is a chance this rope could make you sick and cause you great harm. You might not even need this extra rope at all because you might not even fall.” Furthermore, when we ask this expert tightrope walker what would they do? They answered “no one can know the right answer. No one knows your outcome.”

I’m only just now able to sit and update. Things haven’t been sitting so well with us after the sudden decision required by last Friday and the enormity of it. I think I can speak for Brian as well, but this was the hardest decision we have had to make. Most of our other decisions up to this point seemed intuitive. They may have been hard, but they felt right. But deciding whether or not to enroll Charlotte on this clinical trial to prevent relapse was anguishing to say the least, with no real right answer.

We have decided NOT to enroll Charlotte on this study. Turning down this opportunity was the hardest thing I can remember having to do. It’s part the unknown mixed with the finality of it. They basically let us know that her access to oral DFMO is all or nothing.  Dr. Sholler, who runs the trial, would not grant Charlotte access to this drug without using the chemo along with it. We attempted to apply for expanded use/compassionate use to no avail. After talking to all of the doctors, several of which are Neuroblastoma experts, and hearing their opinion of pros and cons, as well as doing some of our own research and leg work, we decided it did not make sense to put Charlotte on 6 months of more chemo at this time. That choice means she is likely to not receive an opportunity to have access to DFMO which has greatly improved outcomes in children just like her. Hearing the doctor’s somewhat conflict each other, along with some confusing information, puts Brian and I once again in what feels like a helplessly blind position. 

So I started feeling so angry. Anger creeping up like some unwanted vine about to suffocate me. And I started feeling that feeling that I hate feeling. The one where I yell up at god “ENOUGH! Why? None of this is right or fair and we are sick of it! This is never ending!” The fact is, we know Charlotte is at risk for relapse. And we remain alone in figuring out what the hell to do. In the end, the doctors all gave us their blessings to do what we thought was right. And honestly, that made me starting feeling more angry and bitter...which feels wrong to feel. 

I mean what are we doing?! Just 3 days prior we felt great! Charlotte is after all where we prayed she would be. We felt blessed and at peace so why the sudden change? Turns out, the sudden and forced rush of this decision along with conflicting opinions from people we trust and other information...it just rocked our foundation and began to cause us to doubt.  We began to doubt all that we have done up to this point. And to tell you the truth, we still do not feel completely at peace with this decision. Information over load, the stress of that week, the tough conversations that caused us to face our worst fears again, have all taken their toll.

But it is done and we cannot look back. We need to give ourselves grace that we made the best decision with the information we had. That we put Charlotte and our family first which has always been our priority when making decisions. There is another truth: there are no real statistics on someone like Charlotte with her exact response to therapy and with repeating the vaccine trial. She has a real chance at beating this and remaining clear of cancer! So, I’m trying to let God back in. I admit I shut down a little. This week has been hard. We’ve felt lost and afraid and alone and angry. We are just imperfect, flawed humans. And our faith has been shaken. For now, we just need to put this week behind us and move forward, continuing to celebrate exactly where we ARE, which is where we’ve prayed to be. And so we will go and do just that. We have planned a long Mother’s Day weekend to one of our favorite resorts in the Bahamas, Atlantis!!! Brian and I have always wanted to take the kids there and we had a trip planned the summer she ended up relapsing so we had always planned to reschedule it, then COVID hit. So...we will follow all the precautions and just GO. We will also have Brian's mom, our Nana Schue with us! So we have decided to celebrate this moment in time right now, wrap our arms around each other, and turn our eyes back on God and his plans for us.  As always, we have heard your kind, loving, encouraging words and prayers. We can’t thank you enough-- keep them coming village.

Thanks to the covid vacccine, we have been able to visit family and some of our grandparents this spring. (Brian's dad Pops drove down to visit from NJ over a long weekend)

My mom and Mike (Grandma and Choo Choo) came for a weekend visit

Camping in Virginia with Aunt Esther, Uncle Time and cousins and a visit with Nana and Oogie (my dad and Dottie)